Sunday 11 April 2021

Death be not proud

Death be not proud.

Dr Shantanu Abhyankar, Wai.

Just finished reading a book by Dr. Priyadarshini Kulkarni, titled ' Touching hearts, gently. ' 

It describes something that happens every day, death. Of course death is as common as birth but the two usher diametrically different emotions. 

A century ago humans realised that birth needs to be planned. Now it's dawning upon us that terminal illness and death needs to be managed, if not planned.

With increasing life expectancy, India is already facing an epidemic of geriatric patients. Most of them are debilitated, chronically sick, homebound bedbound, terminally ill and usually a financial burden for the family. Also there are those dying young, bringing immense pain and throwing up unimaginable challenges for the family. This book discusses what these people need, Palliative care.

Dr. Kulkarni is one of the pioneers of palliative care in India. Her laudable work at the Cipla cancer care centre in Pune, has received wide appreciation. 

From her extensive experience, she has chosen to narrate 29 odd stories about people on the deathbed. Her style is lucid, easy and unpretentious. The stories are not about medical miracles but about a doctor's efforts to provide compassion,care, comfort and consolation where all hope was lost. It is this that makes the book worth several readings. She describes her speciality as 'low tech', 'High touch' speciality and emphasizes that terminally ill patients are 'individuals with difficulties' and not 'deceased bodies'. 

Though the stories are personal, they are a telling commentary on the health system that we have evolved for ourselves. We boast of a robust family and social support structure but long term and terminal illness shows us so many unmet needs, so many gaps in the system. 

Long term illness is as stressful to the caregiver as it is for the patient. Dr. Kulkarni's heart goes out to the caregiver. She talks about the quality of life of the caregiver, as much as of the patient. 

Patients who are dying may want to do so many things; they may want to repent, apologize, make up, perhaps visit their workplace for one last time, make their wishes known to the family or simply cry. The near and dear one aren't always ready for this. It takes courage and psychological strength to be with someone whom you love and do things that would be for just one last time. Families need directions, help, encouragement and support in the process. A palliative care physician provides all this in a precise and professional manner.

Some may simply be blown over by the very idea of pain. All, of course, wish to have a pain-free death. Dr Kulkarni had a tough time procuring Morphine, due to some age old Indian laws. Her efforts to change the system have now made things easier.

Dignity on the deathbed is neither a priority nor is it easy. We don't even think of it as a right. Training the family in nursing care, pain medication and providing professional help when required, goes a long way. Earlier family physicians used to fulfill some of these duties but with growing specialisation, loss of the family physician system, shrinking family size, expanding urbanization, India needs plenty of old age homes, hospices and palliative care physicians. 

Dr. Kulkarni's book is an eye opener. It also shows the way. Our age old culture has almost anything and everything that we wish. There is the idea of death being a taboo, the most unwanted, the most distressful event and then there is the idea of death being most joyous of the journeys. There are references to samadhi to santhara, but then, most of us mortals, don't belong to the exalted lot who can face death as proudly as the saints. We will need palliative care and its better that we make arrangements for it before it's too late.

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